Friday, August 27, 2010

Going for the jugular in Tampa?

Yesterday I read a post and watched a video on Facebook from a woman who had the CCSVI procedure performed in Tampa, Florida.   Yes, Tampa!  Four and a half hours away from my home!   Well, this was news to me - so I immediately looked up the name of her doctor, read up on his credentials, (which were pretty impressive) and fired off an email to him at around 10:30 PM.  At 11:00 PM I got a reply!  Wow - lucky timing that he was checking his email that late - could it be a sign? 

Anyway, we exchanged three emails and I will be waiting for a phone call to schedule a consult with them.   I have a bunch of questions, and will be speaking to the woman who had the procedure done later later today - she just answered my message to her.   I was told they require 3 days in the area (vs. the 4 days California wanted).   It would certainly be easier than flying 3,000 miles away not to mention the money I'd save in airfare and hotels.   Plus I could get the follow up done by the same people who did the procedure.   I'm getting excited but trying to contain it so I'm not too disappointed if it doesn't work out.  In any event, having more options is only a good thing. 

So this is the latest in my CCSVI journey - come along for the ride but fasten your seat belts.  I've been bumped around on this ride for a few years so be prepared!

Note:  I added a link to a video of  Dr. David Hubbard. It's long but extremely informative and he also explains his version of the CCSVI theory which differs slightly from Dr. Zamboni's.   Both make sense.   It's just great that this is now opening up dialogues in all areas of medicine.

Saturday, August 21, 2010

California Here I Come!

I'm excited.  I've made a decision. For the last 2 years I've been reading, learning, talking to people on line, watching videos, deciphering scientific publications, talking to my doctors and my family, and finally, finally, I have the opportunity and am ready to actually try and DO something to improve my health.

My MS friends will understand when I say we're angry and  frustrated by the medical community's very slow moving system.  This will not be a rant about health care in this country - not enough hours in the day to write about that - but thanks to the MS online community people all over the world have come together to demand - yes, demand - alternatives to the expensive, toxic drugs that are pushed on us.  For me, the drugs didn't work.  Seven years into this disease and I'm now classified as SPMS (secondary progressive multiple sclerosis) with an EDSS score that went from 2.5 to  7.  Listen people, seven is not a good score when 0=no disability and 10=death.

So when Dr. Paolo Zamboni (yep, like the ice machine) published his small study 3 years ago finding that a condition called CCSVI - Chronic Cerebrospinal Venous Insufficiency - was seen in about 92% of people with MS, we pricked up our ears. (For a short history of CCSVI click on the link under "Other Writings".)  What did that mean?  No one really knows for certain.

CCSVI for Dummies  
1.  In CCSVI the veins carrying blood away from the brain are either narrow, blocked, have a valve problem, or are otherwise occluded.  The medical term is stenosis.  This can cause the blood to reflux back into the brain, theoretically leaving iron deposits that cross the blood/brain barrier - where they don't belong.

2.  When a procedure called a balloon angioplasty (or more correctly, venoplasty since it's done on veins rather than arteries) was performed to open up these veins, many people with MS saw improvement in their symptoms.  Angioplasty is performed thousands of times a day on arteries, less often on veins.  It is done by heart surgeons and more commonly by interventional radiologists in a cath lab.

3.  Since no long term studies have been done associating CCSVI and MS, the medical community (read Neurologists) and the insurance industry (read greedy bastards), and the drug companies, (read deep pocket greedy misers) have done nothing but try to discredit this theory.  Well yeah, it's not in their financial interest and certainly will be to their financial detriment if proven correct.

4.  Because the MS community around the world kept clammering for more information, more treatment, more studies, more HELP, the world had to respond.  Only recently have organizations like the National MS Society agreed to fund studies, (but barely and not wholeheardedly - under duress IMHO).

5.  So far (that we know about) 1,200 brave people went outside the US and Canada to get this procedure done.  They posted their before and after videos on YouTube.  They started blogs and chat rooms.  They founded non-profit groups and facebook groups so we could share information.  They held fundraisers for each other.  Leaders and strong patient advocates emerged to teach, encourage and actively support those who want to get the procedure done.

6.  Many had dramatic improvement.  Some had smaller improvements.  One person very early on died after a stent migrated to the heart.  A few had no change in their symptoms.  We don't know exact numbers because this is annecdotal information, as the medical community loves to point out.  A "look back" study could be done but no one seems to be doing that.  Why not?  No money in it.

I've been learning, watching and waiting.  I asked my neurologist if he could order an MRV of the jugular veins when I had my annual marathon of MRIs last month.  He is not an advocate of this theory but he is also not opposed to it - he feels more study is needed.  Well, yes, we all agree study is needed, but my MS isn't waiting for studies - it's marching along quite happily causing me pain and fatigue and more disability.  So I can't wait.  And guess what: lo and behold, the MRV showed narrowing in both jugulars.  A third twisty vein (Azygous) in the chest can't be seen on MRV but there's a good chance there's a problem there too.  So step one accomplished - we know my veins are not normal.  What do I do with that information?
The Society of Interventional Radiologists held a meeting about CCSVI and treatment last month which opened the door to many more questions but also gave legitimacy to this diagnosis.  University of Buffalo has an ongoing study of 1,000 people that thousands more sought to join.   Quickly clinics were opening in places like Mexico and Costa Rica which I was immediately wary of.  Better alternatives seemed to be Bulgaria or India (strange but true).  However, I just couldn't make the leap to travel that far for a possibility of help.  An Albany clinic which is quite reputable has a huge waiting list but, I don't want to wait another year.

So this week, I read about a place in California.  They are an established practice in Interventional Radiology with Board Certified doctors, and they will do this procedure to treat CCSVI.   Email correspondence and voice mails exchanged and they said they could take me in October!  It will require a 4 day stay in the area but the procedure is done as an outpatient.   My son, bless him, also called them but got voice mail and left a message.  But he may actually know one of the radiologists in the practice from St. Vincent's hospital where he worked!  I'm now waiting for a return phone call to schedule a specific date.

I'm excited, nervous, scared, and hopeful all at the same time.  I will be one of the pioneers.  One of the brave who, despite conventional medical advice, will finally take control of my own disease.   I really think this will be a history making year in the annals of MS treatment.  Not a cure - personally, I don't think they will find a cure because in my limited medical opinion, there is not just one cause of MS.  But this can be a treatment that will let people live a better quality of life - and that is what we all want and need.  Quality of life is what it's all about.

It's expensive - insurance will not cover me.   There are no guarantees and in fact, they make you sign that you've read and understand their disclaimer.  I'm realistic and not expecting miracles.  But I'm out of choices and running out of time.  Every day is a struggle and while I'm a pretty strong person and a fighter, I'm telling you that I'm exhausted!  I have so much admiration and respect for the ones who have battled MS for 20 and 30 years.  It's so damn hard to keep fighting while staying positive.  So before I become an old curmudgeon, I'm taking action.   When I put the date on my dance card I'll let everyone know.  I told them anytime after October 1 because I have tickets for Crosby Stills and Nash and I'm not missing that!  (I also need to arrange time away from work.)  Meanwhile, anyone want to come along to California and keep me company when they drain my brain?

Sunday, August 15, 2010

The Power of Song

Think positive.  It's been touted for years as the solution to almost every problem we face and I'm just sick of hearing it.  But the thing is, it works.   I don't think anyone would argue that being negative is a better position than being positive in one's thinking.   When I'm feeling positive about life I'm a happier person.  I'm more fun to be around.   I have more energy - or so it seems.  So the question becomes, how to achieve a positive mindset when you don't have one naturally.  When you wake up in pain, when you try to walk and stumble about, when your bladder just doesn't cooperate with your daily living, how does one remain positive?

One way for me is singing.  As a life long choral singer, I can't imagine a life without music.  But singing can work for anyone - you don't need to have a good voice.  You don't even need a decent voice; you just need to sing.  You can sing a happy song or you can sing the blues.  In fact, singing the blues makes me happy!  Just singing, out loud, alone in your house, or with friends in the car, or in a more formal ensemble setting, will make you feel better about life in general.   I defy anyone to be negative while singing.  Even if the effects are only momentary, it works.  Really - try it.

A theory I came up with is the breathing.  When you sing properly from your diaphragm, you are oxygenating your blood.   For those of us with MS this is quite helpful.  When I've finished a 2 hour rehearsal I leave feeling energized, not exhausted.  It's really very strange because almost any physical effort leaves me with numbing fatigue.  But not singing.   The joy of making music, the physical effort of breathing properly, the camaraderie with fellow choristers,  all give me such a positive feeling that lasts at least 24 hours.   And if it starts to fade, just start singing again!

Of course, there are other strategies to staying positive.  I keep a gratitude journal which I try to write in each night before bed, listing 5 things I'm grateful for.   Believe me, there are days when I can't think of a single thing - but as a wise meditation leader once told me, "When you can't think of anything, write that you are grateful for having five fingers on each hand and count that as 2 things."  (Note: This only applies to those who actually have 10 fingers - if not, use toes.)  The point is, there is always something to be grateful for.   Today I'm grateful that I had the discipline to sit down and add to this blog!  And always, I'm grateful for the power of song.

Monday, August 9, 2010


I'm at a point in my life where I really enjoy my solitude.  I'm not lonely.  I have many friends and a small but wonderful family and can connect with anyone I choose at any time by phone, text, Facebook, email, Twitter, etc.   I just prefer, for the most part, to be by myself.

I'm thinking about this now because I'm at the end of a two week medical hiatus from work and will be returning tomorrow.  Oh how I'm dreading it.   During these past two weeks, I was in more pain than usual, got some upsetting medical updates and had severe fatigue.  I think I only left my home 6 times during that two week period.  But, despite how I was feeling physically, emotionally I felt incredibly free!   I slept when and where I wanted (yes, more than once fell asleep on the couch). I played stupid computer games without criticism; I cooked, read, watched TV and Netflix movies, spent way too much time on Facebook, researched more about CCSVI and made some good contacts, listened to music, meditated, ruminated, and really indulged myself by not creating tasks for myself, other than getting to medical appointments. 

Too hot out today?  Do the grocery shopping tomorrow - brilliant!  How did I not realize this before?  I'm considered to be a pretty intelligent person.  Couldn't I have figured this out?  It's so simple!   I've had to slow down a lot since my MS diagnoses but now I see I was still pushing myself to do more than necessary, and further, creating strategies for getting it done and ticking it off my "to do" list.   But because I had to stay home with my feet elevated, the to-do list didn't get done and amazingly, the world didn't end!

Now I realize that these are two extremes - so I am resolved to find some middle ground and make more time to do less.  (That doesn't sound like it makes sense but it does to me.)

I love that when I'm home alone I have complete control over my actions.  Since I no longer completely control my body, I guess the type-A in me needs to retain control over as much as I can.  But it's also that I don't have to force myself to behave in a socially acceptable way, as I need to do at work.  No need to put on a smile, to please others, to pretend not to be in pain, to reassure others that I'm fine; no need to worry about bladder problems in public, to concentrate intensely on a task only to find my mind wandering; to struggle each morning just to get dressed; no need to pretend to be stronger than I am because, you know what, it's exhausting! 

As I re-read this, it may sound like I am very antisocial and selfish.  But I don't think I am.  I simply  enjoy being with myself just as much as I enjoy being with people I love.  I think that's healthy.   If you don't enjoy your own company, how can you expect others to enjoy being in your company?

At any rate, my two weeks of solitude come to an end tomorrow morning.  I'm going to try and take what I've learned about myself and apply it to my daily living.   Will I revert to my old type-A self?  Time will tell.   Check back when you can to see where I'm at.

Welcome to Triple M (with apologies to Guy Fieri)

Well, it had to happen sooner or later.  I've joined the bloggers. (I guess this would be later.)

This space will have my random thoughts about . . . well, whatever is on my mind at the time.  Probably stuff like family, friends, work, MS, music, life.   My goal is not to get a bunch of followers, but rather to provide an outlet for my thoughts, writings and hopefully to entertain whoever is reading it.   Since I was pretty disciplined prior to 2004 and my MS diagnosis and famously undisciplined since, I'm curious to see if I even have what it takes to stick to writing a blog.  Tune in to see what's on my mind; or not.